We often joke that getting through each day feels like a huge accomplishment. The added stress in our lives comes from navigating and managing a world filled with therapies, doctor appointments, on-going health issues, new (and sometimes scary) symptoms, social stigma, Individualized Education Plans (IEPs), accessibility issues, and yes...Caroline's high level of care. Caring for her every need is deeply fulfilling and comforting, but also exhausting at times. We are incredibly lucky to have additional help from Caroline's nurse and our moms.
Do we feel like we're "missing out" on certain aspects of parenting? Not at all. Those thoughts haven't really bubbled up since the couple of weeks following Caroline's diagnosis. Our lack of direct experience with typical children has certainly shaped our expectations. I enjoy watching my friends interact with their kids. I'm curious and fascinated. I often ask a lot of questions. But I don't look at them and think "Gee, I wish I had that too." Okay...I feel like I need to finally come clean about something. I don't long for a typical child. I don't feel like I'm missing out on certain aspects of parenting. Maybe it's ignorance, denial, a coping mechanism, or all of the above. I really believe that every experience is unique. Some people don't want a partner. Some couples decide not to have children. Some couples decide not to have a second or third child. Some moms decide to stay at home. Some moms decide to work. I don't think there's a specific formula for happiness.
The only person missing out on anything is Caroline. She expresses frustration on a daily basis as result of her inability to communicate what she wants or what she's thinking (for a recent post on this issue, please click here). She's the one who has to deal with the long list of symptoms that affect the quality of her life. She can't "take a break" from Rett Syndrome for a few hours like we can. I feel deep sorrow when I am reminded of the things Caroline will never get to do. But I'm at peace with the fact that the relationship I have with my only child with will never be "typical."
There's no point in fast-forwarding to the future, wondering about all the "could haves" and "should haves." We're just trying our best to live one day at a time. Be at peace with our life. And enjoy the present.
These pictures capture two of my favorite moments from the last couple of weeks